Pages

Sunday, November 29, 2009

Dear Son Medical Update #11

Last night I took Dear Son to the emergency room. His breathing had been quite labored since we had been home and I worried he might die on me. That was frightening to say the least. Last night, around 5:30 p.m. or so, he began yelling out in pain and was having a hard time breathing. I paged Ped Neuro Doc however Dear Son kept yelling out and was breathing so hard that I ended up taking him to the ER. He had been running a small fever all day, around 101 or so, and I had been doing all of his chest pt and nebulizer treatments every four hours with an extra nebulizer treatment during the night. Despite that, he had been struggling to breathe most of the time, especially when he was lying down, so I had kept him in the recliner for most of the day. I was afraid to lie him down in his bed.

It was a lot of work to get him dressed, into the wheelchair, into the car and then in to the emergency room. When we got there, his oxygen saturation was around 86-87 and finally settled around 91 within the five hours we were there. His temperature was normal although I had been giving Motrin and later Tylenol to keep it down. I had been doing this regularly since we left the hospital. Overall, I think moving him around must have helped his lungs a lot (plus the fact that he was sitting in his wheelchair, which had strong side supports and can hold him straighter) because his breathing seemed much better in the emergency room. I think it also helped me just to have him evaluated. I had been working so hard to make sure I was doing everything possible to help him get better and because he had been working so hard to breathe over the last two days, I felt death was imminent. I was a bit afraid of him dying on me and what would happen, etc. so the visit helped give me some peace of mind. I know we are getting to the end of the road with him since his lungs are so weak. I think I finally understand what the ICU docs meant last May when they were concerned about whether or not they could get him off of the vent. I see now how hard it is for Dear Son to breathe and better understand that getting off the vent isn't that easy. I also hadn't felt comfortable enough with him over the last two days to even take a shower without having someone around to watch him. I have to remind myself that he was on the non-rebreather at 12 liters of oxygen less than a week ago and that he has only been off of the oxygen and breathing on his own since Wednesday.

He slept good last night and opened his eyes for a little bit this morning so I felt better. He'll probably be out of it the rest of the day. While I certainly felt he was highly unstable for the past two days, I feel this morning that he's a little better and would rate his status as guarded.

9 comments:

I understand your need to have DS evaluated and the support received from the ER . Are there any visiting nurse agencies available , even through hospice that can come ? My son Dustin had a terrible experience in the last year where he needed an emergency gastrectomy. TO go from icu to home was also intimidating . While we had no visiting nurse, it would have been welcomed.You are doing an awesome job mothering and nursing DS. From his photos, he does look more comfortable at home. I also can appreciate the difficulty you had with the major medical center this time. Sometimes a local hospital can provide better care, as was the case with Dustin's emergency this spring.Praying for you today that you feel supported and DS improves. Anne

Thanks, Anne. Our local hospital isn't very good at all for DS. They missed the MRSA pneumonia in 2006 and he nearly died (He had sepsis, acute respiratory distress syndrome and respiratory failure when I had him transferred to Big Academic Medical Center.). On another occasion, they administered an emergency seizure med and the airway collapsed prior to securing the airway for transport. In short, they aren't really equiped or trained to handle medically complex, special needs children.

As a general rule, I am fairly comfortable leaving the hospital. This time, it was challenging because while he looked very stable at the hospital, once I got home, he wasn't very stable at all.

That is quite a history with your local hospital.I am impressed that your son was able to come off the ventilator and is home.You definetly illustrate why it is so important for us as caregivers to be present and outspoken.Prayers for a healing day. Anne

I am so moved by how well you are doing. DS and you are always in my thoughts and prayers. Hospice is something that you might want to look into. They have a lot of support (through nursing, equipment) they can offer. Will your insurance cover hospice? If I can do anything, please let me know.Susan

I just wanted to tell you that I'm so intrigued with your story. I saw the link to your blog on a Down syndrome site and have checked on your son's condition several times a day ever since. Your love for him just comes shining through in your every word.

Although my younger son was diagnosed with neuroblastoma when he was two (he's now 36) and my eight year old granddaughter has Down syndrome my experience with a hospitalized child is nothing compared to what you've been through.

I really want to thank you for sharing your story. I'm sending the best of thoughts to you and your son. Karen

Keeping you in our thoughts and prayers, Dream Mom. I am relieved that you are at home.As you know, I am close by. If there is ANYTHING that you need (groceries from Jewel? Medication? A homecooked meal for you? Someone to talk to?), I would be honored to help.